MISSION AND MEMBERSHIP OF THE SCIENTIFIC ADVISORY COUNCIL

Mission

The Fibrous Dysplasia Foundation Scientific Advisory Council (SAC) is made up of medical clinicians and researchers with knowledge of skeletal disease and good scientific practice in the investigation of complex multi-system / endocrine related rare disease. Members will assist the Board of Directors in

-- Setting the parameters for a patient registry/bio-repository and establishing best ethical practices in the handling of patient data.
-- Advise the foundation on future directions for research and participate in the creation of requests for proposals.
-- Evaluate proposals submitted to the FD Foundation for research grants (currently a summer assistant ship)

 Review of policy or procedural materials and grant applications by SAC members will largely be conducted independently with feedback provided to relevant board members via email. As needed, FD Foundation board members will compile and circulate summative documents.  It is expected that SAC members will participate in quarterly conference calls to establish the parameters for the registry/bio-
repository and best ethical practices. In the event that the FD Foundation wishes to meet face-to-face with members of the SAC, the FD Foundation will pay for SAC member’s hotel and travel costs. Terms on the SAC are open ended.

 Should a SAC member become involved in FD, MAS or Cherubism research and wish to apply for FD Foundation research funds or develop any other conflict of interest with the SAC mission to evaluate proposals, it is expected that she or he will resign.

Members of the FD Foundation MAC and SAC are expected to comply with all policies of the FD Foundation posted on the website concerning nondiscrimination, harassment, confidentiality, etc.

The participation of MAC and SAC members is public information and will be acknowledged on the FD Foundation website.

 

Membership

Pediatric Orthopedics

Michael Goldberg, MD
Chief, Skeletal Dysplasia Clinic
Center for Clinical and Translational Research
Seattle Children’s Hospital
Clinical Professor and Consulting Orthopedist Children's Hospital
U Washington, Seattle
Seattle, WA

Bone Biology

David Burr, PhD
Professor and Chairman of Anatomy & Cell Biology
Professor, Department of Orthopaedic Surgery
Professor, Department of Biomedical Engineering
Indiana University School of Medicine

Bone and Mineral Metabolism, Genetics

Michael Whyte, MD
Professor of Medicine, Pediatrics, and Genetics
Washington School of Medicine
Medical-Scientific Director, Center for Metabolic Bone Disease and Molecular Research,
Shriner’s Hospitals for Children,
St. Louis, MO

Craniofacial

Leonard Kaban, DMD, MD
Massachusetts General, Harvard
Chief of the Department of Oral and Maxillofacial Surgery Massachusetts General Hospital
Walter C. Guralnick Professor and Chairman of Oral and Maxillofacial Surgery
Harvard School of Dental Medicine
 
Endocrinology

Henry Kronenberg, MD, PhD
Chief, Endocrine Unit
Massachusetts General Hospital
Professor of Medicine
Harvard Medical School

Adult Endocrinology

Dolores Shoback, MD
Professor in Residence
University of California at San Francisco School of Medicine
Department of Medicine
Division of Endocrinology

Pediatric Orthopedics

Horacio Plotkin, MD
Enobia Pharma
245 First St, suite 1815
Cambridge, MA 02142

Bone and Mineral Metabolism

Harald Werner Jueppner
Massachusetts General Hospital
Pediatrics
Endocrine Unit, Thier 10
55 Fruit St
Boston, MA 02114

Pediatric Endocrinology

Thomas Carpenter 
Yale Pediatric Endocrinology
Doctors Building
2 Church Street South
New Haven, CT 06519

Tissue Engineering

Frank Barry PhD
Director, National Centre for Biomedical Engineering Science Professor of Cellular Therapy
Regenerative Medicine Institute
National University of Ireland
Galway, Ireland

Rare disease registry

Cornelius Boerkoel, MD, PhD
Undiagnosed Diseases Program, NHGRI, NIH
9 Memorial Drive, Building 9 Room 1E100
Bethesda, MD 20892

Rare disease biorepository

Dr Susanne Ragg MD PhD
Director, Center for Computational Diagnostics
702 Barnhill Dr. ROC 4340
Indianapolis, IN 46202

Rare Diseases

Andrew Shenker, MD, PhD
Vice President, Disease Area Head, Metabolic Disorders
GlaxoSmithKline Rare Diseases